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Mareth
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I am looking for advice and thought this would be a good place to ask.
I have two little children, dd5 and ds2. Both were high-needs babies. Dh and I have struggled quite a bit with our eldest, a dear, smart, beautiful girl. It seems we have gone through each phase or month or year not knowing fully if her behavior, development, etc. was normal or not. With her being the firstborn we learn right along with her. Haven't had the benefit of knowing what typical children do! My mothering instinct was nagging me early on that something wasn't as it should be. I tried getting help through the normal channels. Many closed doors over the years. Finally this year we've been able to get occupational therapy for her (will be wrapping up 10 months of services soon) and recently began mental health/behavioral services. She's been diagnosed with Sensory Processing Disorder through our OT. Both the therapist and OT are recommending a neuropsychological evaluation. The therapist believes she has Non-Verbal Learning Disability (http://www.med.umich.edu/yourchild/topics/nld.htm) and possibly very high functioning Asperger's.
I feel overwhelmed. I feel better knowing there's something out there that could explain her and help us help her but I feel I've been at this for a long time already and we've only begun with treatment this year.
Researching and reading on SPD has helped me. We're going to put her on a highly regimented visual daily planner with the therapist's help. We'll teach her how to work with her emotions, be more motivated, and do physical activities to improve her behavior, among other specific things. We'll learn how to best reach her academically, too, which I am glad about. Every two hours we need to be doing some sensory diet activities (typically getting her to move a lot and really exert her muscles) for a sustained 20 mins.
So, how do you moms take care of homeschooling, house work, tending to other little ones, cooking, doing errands, you name it, while having such a needy eldest child??
I cook most things from scratch so I am in the kitchen a lot. We're slowing moving towards a paleo/primal nutritional lifestyle. I am an unschooler type, too. But I feel we're behind because I can't even begin to think past OT work and character development and just living in and learning how to be a family! There aren't older children to motivate her to go outside and play, it's pretty much all up to me to work with her. My littles fight quite a bit, too.
Many times my dh and I say to each other, "we have two two-year-olds". Both of us share the melancholic temperament so we're drained pretty easily! My ds is now picking up her bad habits too, ugh. Sometimes I feel closed in because the thought of being in public with her is tiring (never know if it's going to be perfectly fine or really awful and embarrassing). And so many people don't understand. Just recently I had a veteran homeschooling mom look at me strangely and laugh that my 5 yo needs [occupational] therapy.
We live in an area with a lot of homeschoolers. I have to be careful not to get too down when I see other moms really depending on their oldest girls. I don't know if I'll ever have that. Also, we're the odd ones with ONLY two children. Most women I know have four or more children. My dh and I get scared thinking of caring for more children when we're overwhelmed with the two we have. I know children are a blessing but I am kind of sore from life right now.
I've been wanting to post about this for sometime. Thanks for letting me vent. 
I would really appreciate any prayers, too. We need to find a way to pay for the neuropsych testing as it will be very costly. Praying God will show us the right path.
Many thanks!
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Pilgrim
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No advice, or experience here, just wanted to offer hugs, and of course prayers. May God help you guys to find some answers, and hopefully a bit of relief in those answers. Sometimes our crosses feel so overwhelmingly difficult to bear up under, don't they?
Praying, too, that other homeschoolers will be enlightened in their hearts by the Holy Spirit to feel charity instead of judgement for your family. Sometimes it's so easy to judge others, but really the best thing we can do for each other is pray for the others needs and know that we don't know each others stories, and the crosses the other bears. 
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JodieLyn
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I don't have any experience being there. I do have a friend with an autistic son. And it is difficult.
But hopefully I do have a bit of advise that will help ease your burden for a time. Your kids are still very young. What you are doing "OT work and character development and just living in and learning how to be a family!" is all the schooling they need right now.
If you want to read some more look up stuff about "better late than early". I think you'd find it's very reassuring.
I'm sorry you were laughed at. It does sound funny to say a child needs *occupational* therapy.. since they are a little too young for the standard occupation=job definition. And I know it's hard when you're hurting to better explain things. I have read of moms of special needs making up cards.. like business cards (maybe a bit bigger) with a short explanation of the problem that they can just hand to people rather than trying to explain when you're tired and stressed and dealing with your child.
Now I have something else for you to think about. What would you think of you training a "mother's helper" aged child so that she could come over on an occational afternoon to play with your daughter? As one of the moms with the helpful older kids.. it can be really hard for my middle kids to have time "being the oldest". And I'm pretty sure that several of my kids (for example) would be happy to learn how to work with a younger child. As a mother's helper or as a babysitter. Sure it would cost a bit (around here they wouldn't make all that much) but it would give you a bit of a break even if you were still at the house with them. And sometimes, that's all you need to be able to recharge a bit and stay positive.
and 
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Angie Mc
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Mareth! I am so happy that you posted because your story is compelling and full of mama love
First, no looking back OK? You are an amazingly strong and persistent mom, able to keep reaching out and reaching out and reaching out for help! You are super brave to put yourself and your family out there because it just isn't a straight path to help. You have done so much for your daughter already and your early intervention is commendable. Whenever your brain wanders to the past with regret or remorse, just hand it over (and over and over again) to God's Divine Mercy. This moment is perfect in God's eyes even when, or perhaps especially when, we are suffering.
Second, do not let the arrogance or ignorance of your community get to you. I know the unschooling and Catholic circles very well. While I love them as family, I can also say that they have some weaknesses.
The unschooling gang tends to see all interventions as suspect and lean heavily toward letting children develop naturally. While all of that is well and good when properly applied, when misapplied, not so much. If there was ever an exception for needing to intervene, it is for the kids who potentially may be on the autism spectrum. Early intervention is proving over and over again to be positive and productive.
As for family size, oh boy is that a tender place. I'm with you sister in that while my heart longed for many children, four living children is what God has graciously blessed me with. I struggled for years and years, measuring my worth by "the number of children" yardstick. Now that I'm about to be a grandma I can flat out tell you with great confidence, God's gift of children isn't about quantity. It is about the quality of our love. I can see that you are loving big. Just keep on loving big and be confident in your love!
Do you know any other IRL mothers dealing with Aspergers, autism, SPD, or other early childhood concerns? Are you following any blogs on the subjects? This is a "must"...and it won't matter if they are homeschooling or not...if they are Catholic or not...you will share a common sisterhood of empathy.
On a personal note, while I lean toward a "better late than early" educational mentality, my husband is a psychologist. Right now there is a lot of mystery, confusion, and misinformation in the area of Aspbergers and autism and SPD. On one hand there is a lot of pressure to get a diagnosis to start intervention and if a family doesn't do that there is a sort of blaming and finger-pointing that can be very harsh. On the other hand, there is a lot of denial that any of this is real and that the reasons for diagnosing are suspect. Sigh. No wonder mothers are under such pressure!
So, mama, I'm here to tell you that you really are in a pickle! And that's not to discourage you but to encourage you with the fact that life for you as a mother of little ones is hard and your concerns for your daughter are real. And that's why I'm so glad you posted because I want to tell you that....
You are not alone.
You are a great mom.
Your daughter is perfect in God's eyes.
With good information, support, and encouragement, you and your family will thrive!
So, take good care of yourself as you are taking care of your family. Hang around with people who are your friends, who want your best, and who "get it" or are willing to learn. Hold your head high, confident that you are in the middle of your story and that God has great plans for you all.
And I'm praying, Mareth 
Love,
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Angie Mc
Maimeo to Henry! Dave's wife, mom to Mrs. Devin+Michael Pope, Aiden 20,Ian 17,John Paul 11,Catherine (heaven 6/07)
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JodieLyn
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Angie Mc wrote:
| On a personal note, while I lean toward a "better late than early" educational mentality, my husband is a psychologist. Right now there is a lot of mystery, confusion, and misinformation in the area of Aspbergers and autism and SPD. On one hand there is a lot of pressure to get a diagnosis to start intervention and if a family doesn't do that there is a sort of blaming and finger-pointing that can be very harsh. On the other hand, there is a lot of denial that any of this is real and that the reasons for diagnosing are suspect. Sigh. No wonder mothers are under such pressure! |
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Mareth wrote:
| I am an unschooler type, too. But I feel we're behind because I can't even begin to think past OT work and character development and just living in and learning how to be a family! |
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Oh I just wanted to be sure here... I was speaking of acedemics not intervention.. yes they do go somewhat hand in hand(I've had children in speech therapy).. but I just meant I would wait to add any thing acedemic above and beyond the therapy.. and to hopefully help you not feel behind in schooling when the children are only 5 and 2.
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G-18, B-17, G-15, G-14, B-13, B-11, G-9, B-7, B-5, B-4
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Angie Mc
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JodieLyn wrote:
Angie Mc wrote:
| On a personal note, while I lean toward a "better late than early" educational mentality, my husband is a psychologist. Right now there is a lot of mystery, confusion, and misinformation in the area of Aspbergers and autism and SPD. On one hand there is a lot of pressure to get a diagnosis to start intervention and if a family doesn't do that there is a sort of blaming and finger-pointing that can be very harsh. On the other hand, there is a lot of denial that any of this is real and that the reasons for diagnosing are suspect. Sigh. No wonder mothers are under such pressure! |
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Mareth wrote:
| I am an unschooler type, too. But I feel we're behind because I can't even begin to think past OT work and character development and just living in and learning how to be a family! |
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Oh I just wanted to be sure here... I was speaking of acedemics not intervention.. yes they do go somewhat hand in hand(I've had children in speech therapy).. but I just meant I would wait to add any thing acedemic above and beyond the therapy.. and to hopefully help you not feel behind in schooling when the children are only 5 and 2.
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Oh my goodness, Jodie, I'm glad you helped me out here! I typed and posted my reply without reading yours! You are right on here and I whole-heartedly agree that no mother should have extra burdens of feeling her children are behind academically at ages 5 and 2. As a mom of late-reading boys (2 out of 3) and one who has serious reading challenges, I understand the tension between "better late than early" and "early Intervention." Thank you!
Love,
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Angie Mc
Maimeo to Henry! Dave's wife, mom to Mrs. Devin+Michael Pope, Aiden 20,Ian 17,John Paul 11,Catherine (heaven 6/07)
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monica4patience
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Mareth, you keep on being a Mama Bear; that may be the only way to get the services your child and your family need. God gave you a "mother's instinct" for a reason. Do not worry about academics at this point. Once you've figured out her challenges and how to deal with them; then the academics will come and she can be successful.
As an adoptive mother, I was concerned that what I felt as "mother's instinct" wasn't valid. But time and again, our Lord showed me to trust in it. Many times the nurse would question me when I called for an appointment: yes, he is still eating well; yes, he is sleeping; no, he isn't crying in pain; but I know that something is wrong. Inevitably he had an ear infection, pneumonia, asthma flare, RSV, etc. Turns out he has a very high pain tolerance, but I still had a sense that he was ill.
We weren't as successful in the following years.I thought it was me; that I couldn't handle taking two littles on more than 2 errands. I thought I was the one with little patience; what did I do or not do that he had these major meltdowns. It took us many years until we found the right doctor who wasn't afraid to diagnose a child as bipolar. Once our son was on the right meds for the right diagnosis, life got better. At age 12 he finally slept through the night; no more night terrors; no more waking up with an obsessive rage because we wouldn't buy French Silk pie at 3 am!
Finally, a wise doctor, during a 17-day stay in psych hospital, added the diagnosis of "Autistic spectrum". It is very difficult to treat autism at age 15! However, it does help to explain a bit how his brain works/doesn't work.
Now at age 21, our son is living at home, taking community college classes. Sometimes life gets too complicated for him; sometimes his meds need adjusting; sometimes he still rages; he recently spent 8 days in-hospital for a major med change. We're seeing some benefit from the changes. He has many friends (younger); plays guitar and drums; rides his bike; works out at the gym. He helps the younger kids and the elderly at church. He volunteers at a senior home and the women just love him. He has a big heart.
Just thought it might help to know others are in the trenches. I know that the more open I am with people, the more open they are with me. That's how we made most of our connections with the right doctors, therapists and schools.
Will pray for you and your family.
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DD23, DS21, DS13 (all adoptees)
New to homeschooling 11/12.
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Kathryn
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Mareth, you certainly are not alone. I have a DS 13 that has proved to be my most high maintenance, special needs child. We/I have been working on figuring him out for almost 10 years now! Please I hope that doesn't discourage you, but take a deep breath and take it one.thing at a time. If you need to make a list of the areas she needs to work on, do that...that IS her education at this point. I read a quote the other day that education is a whole lot more than just "schooling". Try to find how she learns best, find the means of discipline that works best and STICK TO IT even when you think it's not working. She will likely continue to be a higher needs child so recharging your batteries is an absolute must. I have found that exercise, a break in the evening, reading support groups or books that help me in this journey, prayer, daily mass have all helped me when I'm at a breaking point.
In all honesty I will say that we have a 7 yr gap betw. our ds and my next dd b/c he exhausted me so much as well. Some days he still does but we are obviously beyond thrilled that we were open to life again and were blessed and welcomed 2 more little girls to our family. And I've always said my DS is about 3 yrs behind developmentally as well so you may not be off target by feeling like you have 2 two yr olds. I completely get it!
As to how I do it all? I don't.  There is only so much of me to go around. I have to let some things go.
God Bless you on your journey. I have found one sweet friend that shares a similar child and we've become good friends as well as our children. She's been a blessing but having what seems like only one friend that understands has been hard too. Try to allow this time to bring you closer to our Lord and seek his wisdom and guidance. It will surpass many other well meaning opinions from others even though I *know* it's not easy. I will keep you in prayer and remembrance.
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(dd 16, ds 15, dd 8, dd 5)
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Kathryn
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Oh and we got a full eval from our local school district when DS was 1st grade and it was free. We did another one in 4th grade at a university that was only about $400 (cheap relative to a private rate) and we were very pleased with those results too. We then went back to the public school last year (6th grade) and rec'd a 3rd eval and they were all very consistent as to his issues so I feel confident that they provided accurate insight and a reflection of his abilities and struggles.
And these were the full evals done over numerous days, numerous hours. I don't believe we would have rec'd any better results from paying several thousand $$ to a private practice. So, I would first start by finding a resource cheaper than a private eval. in your area.
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Kathryn in TX
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Mareth
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Thank you, thank you, thank you dear mamas! I have been thinking and praying through your kind and thoughtful words. They have touched me. I knew I was asking the right crowd for guidance! I am going on a retreat this weekend and I will continue to ponder these things. I have more I would like to add to this discussion so I will pick up next week!
Many thanks! And prayers for your families as well.
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MichelleW
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Mareth,
I could have written your post 11 years ago. You are on the right track. I think if I could go back and do it again, I would have worried less about some things and been more aggressive about others. Really, though, as I sit here trying to think this through, it is hard to decide which ones.
I do think it is very lonely to parent a child with these disabilities. There are rewards for sure, but there is a loneliness that is hard to explain as well.
We worked hard at training our son to behave in public. That helped tremendously.
My son has become a compassionate 16 year old. I see him grow every day. There were years when I couldn't see any growth, but now I know he grew like roots in winter. And now, for him, it is spring.
Blessings,
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Michelle
Mom to 3 (dd 14, ds 15, and ds 16)
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Kathryn
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I have DS 13 that I wrote about above but I also have a DD 7 that has a physical disability. It's obvious to "see" her disability and therefore people are warm, compassionate, helpful and caring in ways that I appreciate and also in ways to "see" beyond her physical disability that she has other gifts and talents. With an "invisible" disability like affects the mind, it seems to be more challenging to find the proper support and help from others b/c many have opinions that it must be lack of discipline, poor parenting etc. People don't usu. say that but it comes across in subtle ways. I wish to say,...if you want to judge my parenting...please look at ALL my children.   Speaking of...time to bedtime snack. 
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Mareth
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Michelle, my dh and I loved what you said about roots in winter! Thank you for sharing your story. Sometimes we don't see much change but then it just shows up. Recently, my dd has made more conversation with us beyond just gathering info and having needs met. She actually told me yesterday, "Mama, everything you bake is yummy!" Wow, that warmed my heart! Usually she'd just demand dessert, eat it and then go play. We're working on teaching her how to be human, honestly. How to work with people and be aware. Seeing my ds naturally have the ability to make conversation we realized there was such a difference. I just keep learning along with her! But we are so grateful to God for all her little improvements.
And, Kathryn, I totally understand about physical vs mental/emotional difficulties. People are so forgiving of others with a visible disability. Yeah, when we're in public I feel so watched and scrutinized. I know I struggle with parenting, People, thanks for making me feel even worse! Grr!
My adult sister has Prader-Willi Syndrome so I am familiar with physical and mental disabilities. Many people don't think there is anything abnormal to my sister but she is delayed, temperamental and very overweight but a dear, sweet person! It was hard growing up and people not understanding and I felt embarrassed. Do you tell people she has disabilities or not? Do they think my parents are poor parents because of her weight [part of the PWS condition]? Maybe that's why this is even harder for me having grown up with someone who's had a rough go of things since the beginning. However, I am committed to getting my dd more help than my sister received.
And just before Christmas we found out I am pregnant! Surprise but good one. God must feel we are more capable than we feel! I am really trying to stay calm and not overwhelm myself. God is good in that this is happening this year rather than a year ago. Eek, that was a bad time. Now we have more professional help. If I am more calm and not so impatient and frantic the days go so much better.
I recently finished the book, 33 Days to Morning Glory, based on the de Montfort consecration. On the Unschooling Catholics Yahoo Group there's been a discussion about a motto for 2014. I believe my words are "Mother Mary", "spiritual vessel" and "peace". I went to that retreat in December. At the beginning of the retreat everyone is asked to pull a piece of paper from an envelope. Each one has a title of our Lady from the Litany of Loreto. Mine was "Mary, Spiritual Vessel, pray for us". That means so much to me. I need to grow into my role as the heart and spiritual vessel of my home and family. Time to get rid of old ways and ideas AND pressure and fear of the future. I am valuable for my family TODAY. I have a specific role and it's beautiful. I need to imitate Mother Mary more and have her heart in mine. I need to bring peace wherever I go. There's a lot of stress in my extended family. (See my recent post about asking for prayers for husband and guidance.)
So, how can I make these next few months more pleasant for my children? I feel we've lost what little academic plans I had in Sept. My dd wants to go back to preschool at our parish's school like she did Jan-Jun '13. But I want her home.
Here's what I am planning for the next few months for my dd5.5:
**Homeschool P.E. class and a gymnastics class at the YMCA which will take us out of the home 2x per week
**the primers for Explode the Code (she been enjoying these because they're workbooks??)
**lots of books and visits to the library which she really loves (can't read yet, loves me reading to her, but no real interest in learning to read)
**I am thinking of purchasing RightStart Math
**she loves science - any suggestions?
**Catechesis of the Good Shepherd every Sunday
**and my ds almost 3 just loves to play trains and be read to!
I can't overwhelm myself or we won't accomplish it. I like order and schedules but I am bad about sticking to them. Time management isn't one of my strong points. I have tons of good, beautiful books but I don't know how to organize them so we'll use them in an orderly and logical progression. I have many early elementary books suggested by Jen Mackintosh. I just keep praying God will show me how to be better about time, schedules, commitment, feeling overwhelmed, etc. As you can see I am not one who is invigorated by challenges!
Thanks again!
M
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SallyT
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Mareth, I'm not a schedule person, either! I feel your pain there. What I find is that it helps to think in terms of rhythm and routine, not schedule, with activities tied to given times. Schedules make me go to pieces (because what if we're not doing X at precisely Y time??), but if I just have a general idea of what comes first, what comes next, and so on, in our day, I can do that.
A tip for making sure you read books you want to read -- do you have any kind of face-out book rack, or else a large crate or basket to contain the books you really don't want to forget you have? At the beginning of the school year -- though you could do this any time -- I go through my shelves and pull books I want to remember to get to (above and beyond books I'm specifically assigning for school -- my youngest child is 10, so that happens in my house in a way that it might not happen in yours for a few years yet). I put them in the crate, and I put the crate in some prominent place, like by my favorite chair, where I'll see it. We don't read the books in it super-schematically, but it does help us to remember to read what we have. Beyond that, I kind of let logic and order take care of themselves. If I think too much about those kinds of things, I end up driving myself off a cliff.
I'll also pick books to "strew" in places where my kids congregate -- baskets by couches, etc -- so that they'll be prompted to pick them up. Even a non-reader can enjoy picking up a picture book and leafing through it to "read" the pictures, and that might prompt a request to be read to.
The general principle, I guess, is to get the books off the shelf, where they tend to be forgotten about, and out into plain view -- but still to have them contained so they don't all end up under the couch, equally forgotten.
Prayers for you and your lovely family!
Sally
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Kathryn
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Mareth wrote:
And just before Christmas we found out I am pregnant! Surprise but good one. God must feel we are more capable than we feel! I am really trying to stay calm and not overwhelm myself.
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Congratulations on this new gift of life!! May you continue to find the guidance and help you need with your oldest and your growing family.
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Kathryn in TX
(dd 16, ds 15, dd 8, dd 5)
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Mareth
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Sally, I always love reading your responses. I can relate so often to what you're saying.
Thank you for your prayers and good ideas! I am glad to know that others whom I admire can be happy and successful and also share similar habits to myself, even ones I haven't quite figured out how to work with and make them assets. God must know what He's doing!
Prayers for you and your family, too.
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Mareth
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Kathryn, thank you!! I saw your post after I posted above. Just wanted to thank you for your kind words, prayers, and support! Prayers for you and your family as well.
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4Real Forums : Mothering and Family Life
Topic: Parenting a special needs eldest child
