Raising a child with special needs?

[Courtlove]

Hi being new to this site I have decided to open up a discussion that is very near and dear to my heart dealing with my son. His learning disability is challenging, exhausting and seems to suffocate me sometimes. I find myself frustrated, sometimes to the point of tears trying to explain things to him. Granted I have more patience than 4 years ago, however it still seems as not enough. There is no support from my family and his father provides little to no support. Truthfully sometimes I wish that his father could raise him and take this situation off of my hands all together. Understand me, I do LOVE my son, but allot of times I feel lost and like I am constantly doing the wrong thing.

Please offer any positive advice you may have or parents of special needs how do you cope? where do you find support?

[kim]

Hi Courtney,

I've been home for 20 months with my son who required special care. My son was born at 27 weeks and has a lung disease because of his early delivery. His premature birth was due to me having preeclampsia.

My son was 765 grams and came home on oxygen. I had to learn how to use all kinds of respiratory equipment and manage my other children ages 3 and 6 yrs at the time. My ex of 7yrs and I split and visited my son 2x while my son was hospitalized for 4 months.

Anyway....I say all of this to say I know what your going through from an mental, physical and emotional level. I don't know exactly what your son condition is but I feel your struggle in this discussion. You are not alone and sometimes you feel like how am I going to make it.

Often I am exhausted. I want to open up more to you about the things your feeling that I definitely can relate to but that would be a book not a discussion. So for now I say know that your a wonderful mother who loves her child so much that it hurts. Your son is blessed to have such a wonderful mom to love him UNCONDITIONALLY .

As for SUPPORT- I do have some. I would encourage you to seek counseling. I know that it may sound odd especially for us women of color but It really helps . Trust me. Especially if you have an african american therapist that's a plus.

Courtney you need support. You need to be around other moms who are facing the same challenges that you are. Please look up a therapist. You could be depressed.

Also see if you qualify for a Home Care worker.

This HHA can give you assistance with housework, errands, and a break. I have for my son early intervention therapies. My son has a Physical & Occupational therapist, a teacher, social worker, nurse, and the family has a social worker.

My family has gone through a lot of difficulties partly due to my caring for my son's special needs but God's strength has pulled us through.

Please let me know if I can help you with other resources, this is just a lil' one and forgive me if I'm confusing I'm very tired.
kim

[Courtlove]

Kim, hearing stories like yours brings hope and makes me realize how others truly have more on their plate than myself.
I agree with your comment on seeing a therapist, and have sent you a friend request in order to message you directly.
Thanks for your response.

[Shelbee]

Hi Courtney,

My name is Shelbee and I have a daugther that is a type 1 (insulin dependent) diabetic diagnosed at 2 and she has ADD. LET ME BE CLEAR - IF IT HAD NOT BEEN FOR THE GRACE AND MERCY OF GOD - I WOULD BE INSANE. Continue to be honest with yourself - that will help you own and overcome any difficulties that you may face. GOD gives us HIS strength through OUR weakness. You are going through this for a reason - you will have an awesome testimony for someone. And I say that, because YOU WILL BE VICTORIOUS - I WAS. When my daughter was diagnosed, I was going through a divorce, in the middle of contract negotiations for a new job and my ex did not come to the hospital (she was there a week) and he denied putting her on his insurance until I got on my feet. (I had to turn down the job, because of the demands of her condition). BUT GIRL - I AM STILL STANDING AND YOU WILL BE TOO. I am here for you. Please check out my daughter's web blog: www.youngdivabetic.typepad.com - tell me what you think. Part of this web blog is to create a support & learning network for parents of color with children with disabilities and special needs. I look forward to hearing from you. Peace and Blessings, Shelbee

[Courtlove]

Shelbee, I did read your blog and what a powerful way to educate and provide support.
Thank you for your positive response and will be visiting your blog.

Courtney

[Adonya Wong]

Courtney,

As a mother to a 7 year old son with autism, I feel you. For 6.5 years, I raised him alone; a decision I made when he was not quite a month old and one I don't regret.

One thing I've learned since his diagnosis in '05 is that he truly is the best thing that's ever happened to me. He is truly my greatest love. I was once a VERY selfish, self-centered, arrogant so-and-so, and I needed to be snapped out of my world of delusion! Hello unexpected pregnancy!

That said, I have had many nights of crying myself to sleep. Many days of feeling like the world was against me. Many moments of dealing with the ignorant stares of those who know better but didn't receive good home training because they keep on staring (this one definitely tests my beliefs).

Being a parent is a special gift many chose to open with great joy. Being a parent of a child with special needs is an exceptional gift that requires immense strength, extreme patience, and an abundance of confidence. Sadly, not everyone accepts this gift as another one of God's blessings.

Anyhoo, it took some time before I found people who were supportive. OK. It took me almost 3 years (post-diagnosis). My family is dismissive and downright unsupportive. Then again, they've never been very supportive. TG for other options!

I have since found strength in my friends (whom I lovingly refer to as my family), in my husband, and on online forums like this one. I especially love this site!!!

May I suggest that you take at least 15 minutes for yourself before you start each day (preferably when your house is still. wink wink) and watch God. Go outside with a blanket, lay down on the ground, and look up at the Heavens. Feel joy! Feel gratitude! Feel loved! Feel blessed! (If the weather is bad, go to the window that offers the best view. :D)

Know that what you are feeling is absolutely normal. If you had never felt frustrated as a parent or felt like you needed a good cry then I would have thought you were abnormal. At times, it's okay to feel the way you do. Know this... never again second guess your ability as a parent of this precious little boy! Being there for him, loving him, nurturing him EVERY day tells all of us that you are doing the RIGHT thing! :)

You are never alone! You were once lost, but you found this site. A friend is just a post away! :)

~ Adonya

[Tiffani Keaton]

My youngest son who is almost four had a stroke in utero and had to be prematurely delivered at 33 weeks.He suffered right side weakness as well as seizures as a result of his stroke. he has been in physical and occupational therapy since he was a month old. His therapists have been invaluable with helping me find the support i needed no matter what it was that i needed. my family may not always understand his issues but they are always supportive of my decisions on his behalf. With eight other children (Yeah...I said 8), its not always easy to give myself some time but thats a very important point. Take some time for you...that will allow you to renew yourself and be at your best when dealing with your son. I will keep you in my prayers.

[Courtlove]

Tiffani, your response came on my birthday. Wow- us mothers deal with so much. thanks for sharing your story.

[holli]

Tiffani, I too have a son with autism. I knew when i was carring him that something just wasnt right. I was told shortly after he was born that he had autism with mild mental retardation. I too went thru everything alone. I asked God how long. To see my son now who is almost 11 and to talk to him u cant tell he has it. I was alot of hard work on my part and many hours of non- sleep(still that way.) I had to learn to rely on God. I just moved to anthor state and it is super hard. I can admit i am depressed. But i know God will help. Just give it to God and let him do the rest. love ya

[Bridget]

hello my name is Bridget my son Eric was diagnosed with Autism/PDD at the age of 2. I have a group on msn called helping one another to cope where we help parents of kids with special needs of all kinds. It's hard for parents like us to get the support we need even from the school districts thats why most of us have learned to educate our selfs by reading books, gathering information on the internet or meeting other moms like us. Anything you need please feel free to ask me

[Jessica]

Hey, you're not alone out there! First let me start off by commending you on your hard work. Dealing with a special needs child requires special amounts of love and patients - believe me, I know. My 2 year old daughter has special needs and it hasn't been a picnic dealing with it. I get so sick of constantly having to explain my child's situation over and over to everybody...give me a break!!! And don't even get me started on the unsolicited advice. All in all, I just wanted to let you know that you're not alone out there and if you ever need a friend to vent to - someone that can relate - please contact me! Hope to hear from you

Jessica

[Georgetta Rena Scott]

I Have a question and I am real need of some help I have a special needs child that was taken from her adoptive mother/aunt and I would like to know how do I go about trying to retain custody because as you and I know she will only end up lost in the system and maybe even dead I am really concerned because just not to long ago here in Flint Michigan they just found a child just like mine dead in a storage been and DHS. Yes I am willing to listen and please help before time runs out

[msees]

Georgetta, I don't know how things are done where you live, but I would first go to the agency and express my wishes for taking the child and go from there. Also, if there is a legal aid office in your city or area, I would talk to them to see what my options were, legal aid goes by income if needed, or if you can talk to an attorney and you don't need to use legal aid I would do that. I hope everything works out for you and the child.